Life Celebration on Saturday, May 27th in Menomonie, WI

Life Celebration for Dan Riordan
Saturday, May 27th in Menomonie, WI 54751

1:30pm - UCC Congregational Church (420 Wilson Ave)
    Stories, Poems, and Songs to commemorate Dan's life
    Reception to follow with opportunity for others to share and an opportunity to share Dan's photos

5:00pm - Lucette Brewery and Woodfire Eatery (910 Hudson Road; aka, corner of Highway 29 and Highway P/Hofland Rd; aka Down by the River).
    Join us for dinner and cold beverages.
    A childcare plan for fun and games at Riverside Park has been hatched, but is not fully realized yet! Details under development.

Again, in lieu of flowers, please consider donating to your favorite/local cause. If you need a suggestion, please consider the Bridge to Hope or Stepping Stones in Menomonie.

Thank you - we all hope to see you there.
Mary, Nate, Shana, Clare, Simon, April, and Jane

"Loves spills forth from everything, splashing everything, joining us all together in one wonderful unit."    - Dan Riordan, April 11, 2017

4/29/17: At Peace

Dan passed away early this morning surrounded by the love of his family. He was there as we sang and laughed (and drank whiskey). He waited for his children to assemble, but then slipped away quietly after everyone had gone to sleep. He concluded his email updates to friends by stating, "I am neither worried or afraid." He lived it.

Dying, 4-17-17

Dying 4-17-17

 (Dictation-driven post)

It is like there are three Dan Riordans:

There is one out there, I think of him as Big Dan, floating around

There is the one in the valley I talked about.

Third one  is hard to describe.

 It is like one has to die, but then what hppens to the other two.  Like the Big Dan will be dead, and the third one will be dead, but the one in the valley, flying around with me, will not be dead. Isn’t that odd?

a good day

Got a new hospital bed yesterday, good friends came to discuss spirituality, my doctor paid a house visit to explain the relationship of my meds to my symptoms and to help us set goals for these final weeks. Also got a home health bath.  Felt good. I'm having lots of travel food and travel memories. The travel ones are such fun.. food memories are odd. Yesterday it was baloney and pickle relish sandwiches. I also wander through museums mountains and novels loving the richness in them. Rome and Munich have been leaders. Wish I could go back. Glad that I west was

As this process continues I find I lose more and have give up with dignity. I mean privacy and sense of dignity. I now need assistance changing my Depends..that means someone else removes them gives me a quick clean with a baby wipe.  Often this is a son or daughter. And on the toilet I need to lean against someone as my bowel empties and the another person clean me usually my wife. At first I found these experiences difficult to accept but I have. It makes everyone 's life easier and i have found, oddly, a rewarding level of intimacy and love.  .so, what are dignity and privacy?you have to redefine

Things I learned as I lay dying

This is a dictation-driven post from Dan's bedside today. Part II, so to speak.

I thought the end meant that you just slipped away, the way Zeke did at the end of Parenthood. But that’s not the way it works. I feel like I’m zooming through a thin valley and it’s such a speed I won’t crash into the ground or fly above the edges of the valley. Each time, I see a sort of wall at the end of that valley that I’m going to crash into. But I get to the wall, and there’s an outlet, so I keep zooming along. I’m surprised, I didn’t think I could keep doing that.

The Home Health Nurse was here this week and described my faculties, “His language is good, awareness is good. He could go on for weeks.” I compare it to my friend Joe, who we visited right before he died. There was nothing there, we did not register at all. Two days later – he passed. The mind/language thing is like a railing. So, I’m going along the railing, interestingly, it’s red.  I’m going along that red railing until it breaks – and there I’ll be.

I wonder what that will be like?

(Dictated to Dan's younger son, Simon, on Wednesday, April 12th, 2017 at 6:30pm)

Caring Bridge site

Please be aware of the Caring Bridge site established for Dan (this blog is mentioned there):
https://www.caringbridge.org/visit/danielriordan
You will need to enter an email address, name, and password (and then confirm that you are over 13 and THEN confirm that you are not a robot!)

Thank you!

-Simon

Photos of tumor bulge

Another post on Dan's behalf (from Simon):
Dad requested that we photograph his belly to show the extent of the tumor growth. His daughter, Jane, took these photos and I am publishing them here to maintain the transparency that he has been striving for all along.
I am not sure what causes the smaller red dots that you see, but the tumor bump is especially visible in the first photo. Also visible are the grey Depends that he has been wearing full-time. The band-aid in the second photo is covering the insertion point from his last paracentesis (late last week).
 

Things I learned as I lay dying

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This is a dictation-driven post from Dan's bedside this morning:

• Loves spills forth from everything, splashing everything, joining us all together in one wonderful unit.
• Get rid of all snark – it’s the worst.
• Ya don’t just drift off.
• You’re not ready to go until your mind gets disorganized. Mine isn’t disorganized yet.
• Amazingly, discomforted pain can represent itself as color*. That’s just incredible.
• Every thing, little or small, alive or not alive^, is constantly sending you love - swim in it. We are all a divine union.
• God, I miss food. The other day I really wanted cranberry juice and a white cupcake with chocolate frosting. Sometimes peanut butter and jelly looks so good. I miss… bratwurst, pickle relish, and ketchup. I even miss baloney and pickle relish sandwiches, which I had all through grade school.
• Say ‘thank you’ all the time.

That’s enough for now. Post that on my blog, if you want.

• Last addition – Can’t believe how definite I feel about the things I feel. Nothing is tentative.

Email the list to Mom so she can send it out if she wants. 

Afternoon edits:

• The profuse richness of all things intertwined.
• Makes me feel like Scrooge McDuck. Can't get too serious about this stuff. (6:40pm - request to move this statement)

(Dictated to Dan's younger son, Simon, on Tuesday, April 11th at 10:00am; and 2:00pm)

Notes:

*Yesterday, Dad described pain in his thigh as ‘blue’ and described a recent trip to the bathroom as ‘green.’ This morning, I asked him why he used that description and he said that these two experiences presented as colors to him.

^Dad stumbled upon, and avoided, the word ‘dead’
 
 

Stamina and loss of body mass

I am now skeletal. I have lost 31 pounds since January 1, 2017. I now weigh 150.  During those three months I have had a lot of constipation issues and appetite issues. The constipation issues cause the appetite issues. During January I lived on apple sauce and rice. Then I started to eat ice cream and went on benefiber, a powder that gives bulk to stools.. Those strategies helped for a while  While this was going on I also started regular parecentesis to relieve the discomfort cued by pressure from ascites on my abdomen. I went from every two weeks to once a week and this week will begin twice a week. The cause for this recent change is that on Sunday after my birthday party on Saturday and at the end of two weeks of family visitors I began to throw up. Sunday it was lunch, Monday and Tuesday it was breakfast. During the week my weight dropped ten pounds to its current level.

During all these events and actually going back into the late fall, about November, I have been losing stamina. I first noticed that I would feel like not going for a walk  and b tired as I started out on the walk. Then as the walk progressed I felt a lot stronger. I went back to working out . I was surprised to feel the tiredness in my legs as I worked on the elliptical machines. Then at Christmas we went to Texas. While there I noticed that I was losing body mass in my arms. The first time was a shock. Now I am used to it.

The stamina issue is also related to the constipation issue. Often either before or after a bowel movement I feel quite weak in the legs and now sometimes arms. I don’t know why but this has gone on for months now.

That is it for now for the physical report. I write this and the last one I wrote to help people who are going through this process and would like some idea of what another person has experienced.

3-23-17

A poem and comments on end of life

Like the eagle high over the lake, I ride the thermals of your love, circling, above  the ground, its grasses and ponds, its cares and unknowns. 3-21-17

There’s no play book for what Mary and I are going through, even though thousands of couples do this every year. What do you do when you are the one dying? Others comes to visit, carry on upbeat conversations, send encouraging cards and emails. I am not sure what to do. I am making this up as I go, so is Mary. I try to ask questions of visitors, happy to have their presence. They go back to their daily lives, we go back to this unclear path,

As the end draws near, I also find that there is relatively little information on what is happening to me and what the end looks like. When does it start?  We had company for two weeks during March, wonderful people, my brothers Mike and Tim, Mike’s wife Joanne, their children. Then we had a houseful for my birthday. All the kids, the three Minneapolis grandchildren, April. I loved it, Thursday through Sunday.

Sunday noon I threw up my lunch. Monday and Tuesday I threw up my breakfast. Monday I had some diarrhea but today I had a large bowel movement with a stool 8 inches long. For the past several months my usual bowel movement has been a stool about 2 inches long, followed by a wipe which activates another stool, and then a third one. What is going on? Today, Tuesday, I had nothing until tonight when I had half a cheese sandwich and some apple sauce. Based on the vomiting, we called day surgery yesterday and scheduled a paracentesis today. There is only 5 days in between today’s and the last one. Today they drained 3.7 liters. Five days ago they drained 4.2 liters. Today I am weak. I mostly laid around. At the hospital I had to ride in a wheelchair to check in and to get to the surgery room. You see my exhaustion.

The question for us is Is this the beginning of the end? Or is this a let down after two weeks of intense visiting? Or is it caused by the ascites becoming more active and needing to be drained more frequently? We don’t know. The only information we have is that the oncologist told us that the end was a gradual slowing down. Well, that seems to be the case, at least for the past two days. I weigh about 160, though in the days after a paracentesis I often gain 5-8 pounds which I then lose as a result of the drain, about 2 ponds per liter. I have lost a good deal of body mass. I can nearly circle my arms with my fingers, a far cry from my gym-toned arms of just 6 months ago. My shoulders and upper back show a lot of bone, my legs are thinner, the bones more obvious.

I don’t know what all this means. Not anything good I am sure, but still there is no clear map to tell me that this landmark means I am this far from my destination. Why do I tell you all this? I m trying to set out landmarks for those that come after. I hope that after I am gone, Mary will complete this work.

3-21-17

A few things I have learned

Several things I have learned.
One of the most important things I do now is say thank you. I always said thank you a lot, but now I do it for everything. I receive so much help in many small ways and now I am careful to express my thanks.

I have learned to accept the outpouring of love and concern that is sent to me. I am thankful for it, but even more I accept it and let it help me deal with my condition. I was unsure how to respond to these expressions at first, but now I let them fill me with joy. I have also learned how grand people are. The cards, emails, visits fill me with joy and show me the fine side of so many people

I have learned to characterize many acts and bits of news as great or good. Before I just listened. Whatever was nice but that was about it. Now I invest myself in the news and respond in a positive way.

I really enjoy these three aspects of this time in my life and I am glad I have had the time to become aware of them and act on them.

Medications to ease stomach GI discomfort

Here's what I am doing to control the stomach GI discomfort that comes with prostate cancer in the abdominal cavity. Every day I take 3 ondancetron--at breakfast, about 5 pm and in the middle of the night. I also take a protonix in the morning. The ondancetron has eliminated the vomiting that I experienced in January. The protonix keeps the acid stomach under control. I also take a tablespoon of fiber powder (Benefiber Healthy Shape Fiber Supplement) dissolved in water every day. The fiber has largely ended the weakness in my legs that I felt every time I defecated. However, it also has caused constipation.  I still poop every day but it is a slow process with a number of wipes. The last thing in this list is that I have a paracentesis regularly to drain all the ascites out of me. When my abdomen fills up with ascites I have pressure on my stomach reducing my appetite. I have had the paracenteses either every week or every two weeks.

I detail all this because it took various doctors a number of weeks to get me to this regimen. If this happens to you ask about these medications as soon as you can.

Decision to refuse clinical trial

On March 3, 2017 sent out the message below.  It was a difficult decision but one I am comfortable with, at peace.

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Hi all, Here is my update. I will get to my physical and emotional report in a moment, but first my decision and why I made it. I have decided not to pursue a clinical trial in Texas or anywhere. The trials I was looking at dealt with the immunotherapy drug ipilimumab. After inquiries and research I have been unable to find any data that convinces me that I should put myself and my family and friends through an extended program. I could find no data that showed that I would have a recovery chance (or extension of life chance) from it. I also found that one of the side effects is difficult stomach issues. My stomach has hurt for the past three months; I won’t add to the discomfort.  When I checked with the program at MD Anderson in Houston about the results that they are seeing, I was told that they did not have any data that they could share with me.   I also checked for relevant programs at the U of Minnesota, at Mayo in Rochester, and a neat one at the Koch Center in Pittsburgh (they have an effective treatment for reducing tumors in the peritoneal cavity, for a number of cancers but not prostate. That phone call took less than five minutes.) And so, the Hail Mary is over. I guess  am not Aaron Rodgers. No PSA to report this time. The Doctors are finished collecting that data.

So on to what is a wonderful quality of life for me right now. Yes my stomach often hurts, I feel like I have to poop any minute now, and my legs are weak some days. Part of the stomach issue is the ascites that has to be drained out of me every so often (a process called paracentesis in case you ever need it for a crossword). But wth some very fine advice from several doctors and our dietician daughter-in-law and the care from Mary, I am eating better and enjoying it more. I have good days and bad.  I get my walks in as much as I can. I have had two exhibits of my photos. One just closed and the other is up into the middle of March. I have received visits and mail that are humbling and joyful. I haven’t responded to all of them but they touch me profoundly. You guys are great. I have continued to work on spirituality and am glad for the time I have to let my thinking develop. It keeps revealing itself and that is so fun. I have done a good deal of reading and also a lot of review of my own emotional experiences. I have a not-very-finished piece on spirituality if you would like to read it. 

The oncologist told me I had 1-2 months. Well, I got one down and hope that I can celebrate a few more first days of the month.

I will keep you informed as this progresses. I tried telling the cancer to go away but that didn’t work. I am not worried and I am not afraid. Actually I feel at peace. I couldn’t do this without you. You mean so much to me. I love you so. 

Hug the ones you love,

Dan

Tiredness, stomach issues and constipation

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While describing this discomfort is not fun, it seems an important act to relate what has happened to me in the last 6-8 weeks. Throughout the chemo therapy I had stomach discomfort and constipation issues.  I took various medications including Ondansetron, protonix, Miralax, and senna. None of them helped much. Starting around December 20 the problems got worse. I spent a number of afternoons taking naps in Texas. When we got home on December 31, I went to the hospital for extreme discomfort. I was in the hospital for three days. Then began my experience of ‘ascites management.’ Tired legs. Stated eating much less, lost body mass. Had a paracentesis January 1, January 13, and January 26. Spent January tired and sitting around.  Finally was put on protonix once a day and ondansetron 3 times a day. Then Dr. Saha urged me to begin eating more. I needed about 1800 calories a day and was eating way less than that. I began to do so. My energy picked up quite a bit. I ate ice cream and other high energy foods. I have begun to eat salads in order to get the fiber I need to create stool movements. That has finally happened, though the stools are very small. I have also begun to drink smoothies after our daughte-in-law Shana showed us how to make them. I have tried some of the energy drinks, like Boost, but don’t enjoy the very fake tastes of the chocolate and vanilla.

Letter to Suport Group January 11, 2017

I sent this letter to my family and support group on January 11, 2017.  The ongoing issue has been the stomach issues, which have affected my appetite and the amount I have eaten. As a result I have lost weight.  My GP put me on three ondansetron a day and one protonix a day. These two medications have reduced my discomfort and allowed me to consume many more aalories a day than I did during January.  I have the surgeon who conducts the paracentesis (drain ascites out of my abdominal cavity) to thank for the encouragement to eat much more than I had been.

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Hi, this report is a bit more difficult than ones I have previously written. So first some bad news and then some good. My PSA is 68 up once again. As a result I am finished with chemo. That leaves me with some difficult choices. I can try to enter a clinical trial in Texas (I will talk to them and let you know), I can continue on an old chemo daily pill, or I can join hospice. The oncologist thinks I have about 4 months left on this glorious earth. There. That’s the worst. At this point I do not know which I will choose, maybe several.

Since my last chemo session in late November I have had non-stop stomach and lower GI ailments that have left me feeling weak and quite a few pounds lighter. At one point I spent 4 days in the hospital as they worked on my problems. As a result I had 3 liters of ascites (a fluid in the abdominal cavity) drained from me and will have several more drained on this Friday. 

But we had a wonderful Christmas. The entire family gathered on South Padre Island in a big house (7 bathrooms, 3 kitchens, a pool) on the beach. We had a marvelous week sharing adventures of many kinds. What a wonderful gift we were all able to give one another. In the upcoming weeks I will have two displays of my photos in local venues.  One display is a picture from each month of my 366 project and the other is my images from the same project paired with the oil painting renditions of those images by a local artist. It is such fun to share my work. My niece, brother and sister-in-law will visit us next weekend and the first week of February we hope to be in Seattle for a much looked forward to visit.

I am not sure of any travel plans for our future. If my stomach quiets down we will try to get out to see whatever is interesting in the area.

We have some serious work ahead of us. Thank you once again, as I have said so many times, for your support. I could not do this without you. As I go forward I am not afraid and I am not worried.

I love you. Hug the ones you love,

Dan

Emaill to Suport Group Feb 4, 2017

I sent this post to my support group on February 4.

Hi, I saw both my GP and my oncologist Friday, Feb 3. The results of the meetings were not unexpected though a bit stark. The GP told me that I would be in ‘ascites management’ from now on. In other words the stomach issues are caused by ascites and are not going away. Periodically I will have to have a ‘drain’ or paracentesis. I had three in January, the last one being January 26. I am taking an anti nausea pill, ondansetron, three times a day. Currently it is helping quite a bit. Last few nights I even had cake and ice cream.

The oncologist was more bleak. In line with what he has been saying since November he now thinks that I have 1-2 months left. In November he thought 3-4. That was hard. He based his conclusion on the change in my physical state since November. I am now 20 pounds lighter than I was then. He also reviewed some clinical trials and suggested, without a lot of enthusiasm, that I could apply to several at the university of Minnesota. I will do so on Sunday or Monday. If those don’t work out, I might still try Houston, but I am not sure about that. He did say that if I am going to get into a trial that I need to do it quickly.

We had already come to the same conclusions that both of them gave us, but having them say it puts a kind of no-doubt-about-it on those conclusions. It is hard to say that those visits gave peace of mind but in a way they did. Things are clear to me. I have a few important decisions to make and will do so in the next few days. 

To end this on an upper note, this past week the photo group had an opening party for me at the Barrel Room. Almost everyone was there. We stayed for an hour and a half and had a wonderful visit. Several people wanted one or the other of the photos and so we gave them to them and marked them as sold.  It was such a fun evening, so full of love and giving. In my new sense of things, it was very spiritual. And if you want to see the photos of a guy who also did a 365 project, google That Tree and Mark Hirsch. He took pictures of the same tree for a year. They are fabulous.

I love you.

Dad Dan Doc